How could eHealth support people living with HIV/AIDS? This was the topic of an international workshop organized by the NST on 11-12 June 2005 in connection with the 46664 Arctic Concert in Tromsø. Some 25 international participants sat together for two days discussing the potential use of eHealth to combat HIV/AIDS.
The HIV/AIDS pandemic is one of the largest global health problems. The World Health Organization (WHO) estimates that around 40 million people are living with HIV worldwide, including 2.5 million children under the age of 15. As a WHO collaborating centre for telemedicine, the Norwegian Centre for Telemedicine (NST) has been requested to explore the potential for telemedicine in health management for people living with HIV/AIDS in the developing world.
The aim of the workshop was to explore how eHealth can improve the quality of life for people living with HIV/AIDS. In the course of the workshop, various concepts for sustainable telemedicine service and distance training for HIV/AIDS health management was discussed. A joint list of actions was proposed as the outcome of the workshop.
The concept of the workshop was to invite a limited number of participants from research, health-care provision and eHealth, with a shared background and interest in the field of HIV/AIDS. The programme was developed in collaboration with the workshop participants coming from South-Africa, Russia, Botswana, Belgium, UK, Karelia and Norway, in addition to international organizations as the World Health Organization (WHO) and the Constellation for Aids Competence. Prior to the workshop, the NST organized telephone- and video-conferencing meetings with the participants to develop the programme and ensure a multi-professional and dedicated group of participants.
The workshop was organized by the Norwegian Centre for Telemedicine/World Health Organization Collaborating Centre for Telemedicine (NST) in collaboration with the University of Tromsø.
The workshop was divided into three parts, a general introduction to the HIV pandemic and with an introduction to eHealth, followed by specific introductions of eHealth applications for HIV/AIDS and working group discussions.
An introduction to the global HIV/AIDS challenge was made by the World Health Organization and the Constellation for Aids Competence. There were reports on various aspects working with HIV/AIDS from four local settings, from the Humanitarian Action Foundation in St. Petersburg (Russia), Haydom Lutheran Hospital (Tanzania), MindSet Health Channel (South Africa) and Quality assurance in HIV-testing (Norway). Other reports were on practical experience of using eHealth in prevention, treatment, follow-up and human resources development. The introductory presentations gave the participants some ideas to reflect upon by presenting some examples of eHealth support in HIV/AIDS.
The "Map of Medicine" is a clinical knowledge system developed by the National Health Service (NHS) in the UK, combining specialist knowledge with best practise. From the Institute of Tropical Medicine Antwerp (ITMA) an example on how e-mail/web-based systems can provide remote consultations for health care personnel in rural areas and clinical mentoring was presented. Cell Life gave an example of patient follow up in South Africa. Cell Life's activities are dedicated to the provision of an innovative technology-based platform for communication, information and logistical support, required to manage HIV/AIDS in Africa. The NST unit of Net-based education gave an introduction to their programmes and services: Consulting and training in e-learning tools for content-production, educational guidance and help with development and implementation of health-related learning programmes, consulting in organizational issues and local foothold, technical support, technical operation of the service and evaluation. All presentations are available here.
Participants were divided into four working-groups with 4-7 participants in each. The recommendations from the working-groups were summarized and discussed in plenary in the final part of the workshop. The interactive sessions (working groups) were organized by four topics discussing the potential of eHealth support to combat HIV/AIDS targeting various parts of the health service provision chain:
(i) Patient health information
(ii) Patient follow-up
(iii) Remote consultation
(iv) Remote training
Since the topics are closely inter-linked, the recommendations and actions in the following are not divided by the topics but presented together.
The HIV/AIDS pandemic is one of the most serious threats in the world today. The numerous challenges are present at all levels, in people's minds, in families and communities, in the health service provision, in the national and global economies. Acknowledging the challenges, it was an aim of the workshop to focus on the areas where eHealth technologies could make a difference to people; patients, peers and care-givers. For example, stigma and non-adherence to drug programmes is an area where eHealth, but not eHealth alone, could assist.
Technological issues are another concern, especially confidentiality and security aspects regarding personal data and lack of software communication standards. Poor access to knowledge resources with respect to scientific and other peer activities within treatment and research could impose an inhibiting factor on advancement. Training and re-training is an area of concern when introducing eHealth technologies as this is a constant need when human resources are at risk themselves. In poor settings, it is always a risk that equipment can be stolen and resold, but this should not be an argument for not introducing eHealth where it is needed and could prove useful.
There is a need for evidence based knowledge in the field of eHealth for HIV/AIDS. Until now, few studies are found on eHealth in the field of HIV/AIDS in developing countries. Pilot projects and feasibility studies are needed. These should not be experimental, but focus on new areas of use, or scaling-up smaller eHealth services. For example, in distance education there are several learning systems available, and hence focus should be on content production and implementations.
Patient follow-up is one of the most critical issues in HIV/AIDS treatment. The drop-out rate is high when patients are introduced to ARV treatment, some because of fear, some experience severe side-effects and some leave the programme because they are temporary feeling better. In this phase, eHealth could support in intensified direct contact with people, 24 hours a day, and with patient information systems.
eHealth technologies is not different from other innovative actions, and should always recognize the importance of cultural context. This implies that technology has to follow the culture. There is a need to challenge the Western ways of doing things, e.g. focus on family in stead of the individual approach, and the expert-system. eHealth is an opportunity for transferring medical expertise and control from the doctors to the HIV/AIDS- patient and treatment groups.
Translation of content (courses, treatment, etc) should be treated carefully and adopted to the local context. Using a bottom-up approach to content management by a community can be powerful. A typical example is the online, user driven encyclopaedia Wikipedia. This model could be used for making all types of content production public, medical content included. We should develop and search for systems that are transparent and ensure open communication (open source).
The intensive two days event was a success by creating an arena for mutual exchange of ideas and knowledge, connecting people from different organizations and countries sharing the same interest in using eHealth for combating HIV/AIDS. This report can only reflect some of the many discussions which took place in the course of the workshop. The workshop acknowledges the serious needs and challenges when combating HIV/AIDS; the lack of funding, the need of improved access to drugs, strengthening prevention programmes, the problem with brain-drain and health care professionals who are also infected by the disease and the stigmatization of HIV-patients, to mention a few. Acknowledging the challenges, there are some areas where eHealth technologies could make a difference to people; patients, peers and care-givers.
People living with HIV/AIDS should be provided quality health services where they live. Not only could eHealth improve quality of life, it could also enable a more cost-efficient health care system. eHealth technologies should always recognize the importance of cultural context. This implies that technology has to follow the culture. There is a need to challenge the Western ways of doing things, e.g. focus on family in stead of the individual approach, and the expert-system. eHealth is an opportunity for transferring medical expertise and control from the doctors to the HIV/AIDS- patient and treatment groups
There is a need for evidence based knowledge in the field of eHealth for HIV/AIDS. Until now, few studies are found on eHealth in the field of HIV/AIDS in developing countries. Pilot projects and feasibility studies are needed. The workshop provided a platform for taking some of these ideas further. It is our expectations that at least some of the proposed joint actions will prove to be actual collaborative actions.
The organizers whish to thank everyone who contributed to making the workshop a successful place for exchanging ideas and knowledge. Thanks to all contributors, also to those who unfortunately was not able to attend. We would especially like to thank Dr Sanjay P. Sood who made a desktop research prior to the workshop.